Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Arany
Hello All!
I was wondering if anyone has been on Ampyra and/or Baclofen, and quit because their bodies recovered from the relapse. Please say yes.
I'm in PT at a pool, but my schedule doesn't allow me to go consistently. Has anyone found therapy helped them long term to get off these drugs?
Vent:
I'm sick and tired of my dependency of these two drugs. If I forget one dose of Ampyra then my knees take a week to recover. I took two doses of Ampyra at the same time because my Baclofen looks identical but smaller, and felt pretty crappy all day. I take five drugs in total and before ms I was free and clear of all things in pill/infusion/injection free.
My medicine cabinet wakes me up every day at the same time every day.
Even though I don't like these drugs, they help me greatly so I'm thankful my insurance pays for all of my treatments. However, it would be nice to eliminate one if there is a way.
Disability:
A year after my little girl was born I went from a 0 to 6 on the disability scale in 5 months. This lasted until she was 3.5yo when I started taking ampyra. I believe I'm now a 3 or 3.5. The meds work and my life has changed for the better.
I was wondering if anyone has been on Ampyra and/or Baclofen, and quit because their bodies recovered from the relapse. Please say yes.
I'm in PT at a pool, but my schedule doesn't allow me to go consistently. Has anyone found therapy helped them long term to get off these drugs?
Vent:
I'm sick and tired of my dependency of these two drugs. If I forget one dose of Ampyra then my knees take a week to recover. I took two doses of Ampyra at the same time because my Baclofen looks identical but smaller, and felt pretty crappy all day. I take five drugs in total and before ms I was free and clear of all things in pill/infusion/injection free.
My medicine cabinet wakes me up every day at the same time every day.
Even though I don't like these drugs, they help me greatly so I'm thankful my insurance pays for all of my treatments. However, it would be nice to eliminate one if there is a way.
Disability:
A year after my little girl was born I went from a 0 to 6 on the disability scale in 5 months. This lasted until she was 3.5yo when I started taking ampyra. I believe I'm now a 3 or 3.5. The meds work and my life has changed for the better.
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Depending on your level of spasticity you can try magnesium or marijuana. But once spasticity gets serious magnesium alone cannot treat it. I don't know about marijuana but all reports are that it helps.
Take care
Melanie
I didn't know anyone responded because DS didn't send emails like they had in the past. So glad to hear back from you all!
You all have given me pretty good feedback on the drugs I asked about. I haven't had side effects from any of them so I take 2 Ampyra and 4 10mg Baclofen 2x's daily. After reading your comments, I may try to scale back on Baclofen and see if I really need it. I can't scale back on Ampyra; my knees feel it the next day. Maybe I'll try magnesium while cutting back.
I can't remember when my bladder started to fail, but I know where all of the restrooms are in a 30 mile radius of my home. There have been a few accidents over the last year, and maybe even a story that involves the backseat of our car and a tall startbucks cup! Maybe. I have urgency, frequency, and hesitancy. My urologist prescribed Vesicare to help out a little. It works, but I'm wondering if Baclofen is causing bladder dysfunction. Thank you Princess for sharing that info!
PT has helped out, but I'm not consistent. That's pretty good info on the therapy pool. I'll have to look into it. It would be so much easier to hop in whenever you wanted.
Thanks everyone!
I get dry mouth from taking some of my meds. I am cutting my baclofen down because I already take zantaflex at bed but I was taking baclofen in addition. They do the same thing but I wanted to make sure I slept. But it is harder to get up with both of them.
I stopped taking my Rebif approx. 4 weeks ago and I wonder if it isn't helping me. I am starting to walk better. I think that cutting back on meds is helping me. IMHO.
Ampyra makes my legs tingle more.
Also, thanks to what I read by princessgwenda, I think my suspicions that the baclofen was weakening my bladder have been confirmed. I started cutting back instinctively a week or so ago.
Sorry that you get problems with Amypra when you stop. If you want to stop taking them, talk to your doctor about what to do to taper off. Lorrieonline says that she gets a lot of benefits from magnesium.